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Sunday, 29 January 2017

Top Tips for Benefits Applicants: Part One

Today I’m going to be going through some tips I have on applying for benefits. This is based on the UK benefits system, and is aimed at Spoonies and their carers, but it might be interesting for other people to realise the amount of thought and effort it takes to apply for these kind of things.
The PIP form alone is forty pages long, and when your illness is one that attacks your energy reserves, that’s a real struggle to manage.

There’s also the emotional side that goes with it; as someone who’d avoided asking for things from the State, I found it quite difficult to admit that I needed to apply for help with medical costs.
As you know, there are no direct treatments for ME/CFS, but the costs of living with a condition like this are still high, and are higher still if you look for support outside the (honestly quite limited) help the NHS is currently able to provide. (This is often through no fault of their own, they just don’t have the funds, staff, and research available to give other treatment. Unless they support the PACE trial. Then it's all them.)

I’m not really able to go through each question individually, but I have some more general things to bear in mind that I think will help people applying.
By following the steps I’ll list below I was able to get my benefit without having to go through any appeal stages and had a generally positive experience with the welfare system. Although I certainly can’t guarantee others will too, I can at least try to help where I can.

I’ll also be listing places where you can get more comprehensive help on each of the forms.
Because of the mammoth size of this guide (which has taken me a whopping nine months to write), I’ll be dividing this up into three posts. I’ll put links in each to make sure you can access the other parts easily.

1. Stay CalmIn the immortal words of Douglas Adams, “Don’t Panic.”
Applying for benefits is a bit of emotional rollercoaster, and is generally extremely intimidating, but you’re not on your own.
There are a number of great, free resources available to sufferers which can help, and, although there are a lot of horror stories about people finding getting their benefits difficult, there are ways in place to contest if you think your case been handled poorly, and there are people who have a generally positive experience. I am one of these examples, so know that they DO EXIST.

2. Get supportAs I said before, there are a great deal of amazing resources to help applicants.

The ME Association has both a general guide on benefits to help you find out which you may be eligible for, and individual guides for each benefit. These guides aren’t free, but they are very reasonable and are very, very detailed; going through each question on the form, and further advice on medical assessments and what to do if you need to appeal. The guides range from £1 to £3.
The main advantage of these guides is that they’re catered specifically to people with ME/CFS, and help you negotiate some of the trickier aspects of having a condition that isn’t as obvious to the casual observer than other conditions. I can’t really recommend these highly enough.

The ME Association also run ME Connect, a phone service where you can get information and support. They’re not able to give detailed information on benefits, but knowing there’s an actual human to talk to can be really helpful.

Similarly, the Citizen’s Advice Bureau (CAB) has guides on their website. They have large sections on PIP and ESA and, again, give advice on each individual question, and general information on the appeals process. These are free, but are directed more generally at sick or disabled people, and therefore don’t have specific advice for ME/CFS sufferers.
You can also go into your local CAB office in person to find out information, although it’s unlikely they’d be able to help you fill out the forms in person.

Disability Rights UK publish the Disability Rights Handbook and have factsheets available on benefits online.

SCOPE (which was DIAL) has information on networks in different areas for people to get support and advice.

There is a great blog post from Kitty Jones on Wordpress that talks about things to keep in mind when claiming for ESA, and this knowledge is pretty much applicable to PIP applications as well.
There is also some information on how ATOS may word questions in health assessments to assess your health, which are worth reading, as many of them do not actually give an accurate view of the situation as a whole.
If you know what they might ask and why they’re asking, you can explain the situation fully.
For example she states that “Do you use the internet?”, and you saying "yes", may lead to them reporting that you have no visual problems, where in fact it may be that you do after a certain time, or have visual problems in different circumstances. If you know why they’re asking, you can quantify that you can only use the internet for a certain amount of time, or that you can use the internet but find reading from a book difficult, for example.

There are two paid websites that take you through every aspect of the process, from filling in the form all the way to the appeals process, and these are Benefits and Work, and Fightback 4 Justice. From what I’m able to see their sites and guides look to be comprehensive, although Fightback 4 Justice is more known for their appeals work. These are more expensive options, and if you feel more comfortable trying on your own first, then it’s totally possible to get the benefits you’re entitled to without these services (I did), but it’s amazing to know that these services exist, and have a very high success rate.
Benefits and Work costs £19.95 for a years full membership, and Fightback 4 Justice had two levels available; £4.99 per month for fixed access to their resources, and £11.99 per month for total access.

Advice Now also have a guide on the PIP appeals stage, which is free to download.

There’s a group on Facebook which you can join called M.E. & Chronic Illness Benefits Advice Group, which also give advice and help from applicants. It’s a closed group, and you need to prove you’re a human to join, but they have instructions for that on the blurb of the group.

Don’t forget, there are plenty of resources in others too. Talk to your Spoonie friends who’ve applied to see how they did, ask questions on forums, and, if you’re able, ask for help from your carers, friends or family. It’s perfectly alright to get help physically filling in the form, as well as getting the supporting evidence, or helping you organise or attend your assessment with you.

3. Start EarlyIf you know you’re going to need to apply for benefits, it’s worth starting to prepare early. Read up on the questions you’ll be asked and start jotting down bullet point answers while you wait for the form to arrive. Contact your medical professionals and ask for your supporting medical evidence, so it’ll be ready to add, or on it’s way, when your receive the form.
The process is stressful, so spreading out its completion over a longer period and taking the pressure off will only help you in the long run.
The forms also have a deadline of when they need to be returned, so starting early will make it a bit easier for you to deal with the time constraints.

4. Get EvidenceOn my internet forum travels, I once saw a comment from a benefits applicant stating that they hadn’t provided evidence with their application, because if the government wanted evidence, they should find it: this is absolutely wrong and I cannot overstate the importance of providing evidence to support your application if you’re able to get it.
The government is legally under no obligation to give you benefits designed for the sick and disabled unless you are able to prove that you are sick or disabled.
What’s more, we all know the government is trying to save money wherever it can, and if you don’t have evidence of your condition it will make it a lot easier for them to decide against you. If you can possibly prevent it, do not make it easier for them to say no to giving you money you are entitled to.
I know that having to search around for proof that you are ill is frustrating, tiring, and feels like the opposite of what you need to be doing to get well or even manage your condition, but I can pretty much guarantee you that not providing it will lead to a much more difficult, frustrating and stressful situation in the long run.

Resources for supporting evidence are as follows:

Your GP (if your GP isn’t supportive, then it’s a good time to change, most of the other medical professionals are accessed via GPs when they refer you)

Physiotherapists

Any Carers you have

Social and support workers

Occupational Therapists

Any Counsellors or Psychologists you see

Nurses or Doctors from your local NHS ME/CFS clinic

Any medical professionals you have from a private ME/CFS clinic (although you’ll likely have to pay for a letter from them)

And of course any Specialists well versed in the condition

(If you don’t have ME/CFS services in your area, don’t panic, you can say this on your form, as it’s evidence that you don’t have access to services that would help you deal with your condition.)
This is where calling on any reinforcements in your daily life will come in handy; your friends, family, or carers can help you compose and send emails or letters to your medical professionals, they can make you a cuppa while you call your GP. If you are unable to use the telephone get someone to call with you so that they can take over when you tire. You can nominate them to speak on your behalf.

Friends and family can even write their own reports to back up those of the medical professionals, although make sure you choose people who are fully aware of the impact your illness has had on you.

One thing I would say is that even if you don’t receive your evidence back from your various sources in time, don’t delay sending off the form. You can always say you're awaiting evidence in the form and send it on when it arrives.

Finally, make sure you make copies of all your evidence before you send anything off.

(Edit: Robin has commented below with some great options for compiling objective evidence yourself, so take a look at that!)

5. Fill in in pencil firstIt might sound a bit patronising, but if you’re anything like me and have fairly large handwriting, you’ll realise fairly quickly that the spaces are tiny, and that its easier to try and make everything fit in pencil first, and go over in pen later. You’d be surprised how much information actually needs to go into one of these applications.
Also, due to those pesky cognitive symptoms, the chances of you forgetting something and then having to try and squeeze it in later are pretty high. Pencil is the way forward. If you don’t have the heart to go over it in pen later, then you can always ask someone to do that bit for you. That’s what I tend to do.

6. Be honest / No SugarcoatingIt’s all too easy to fall into a habit of making light of our situations; it’s more palatable to friends and family, and it helps us remain more upbeat in what can be a pretty horrible situation. But this is not the time to do that.

I know it’s depressing thinking about just how bad things get, but that’s exactly what you need to do, in the application and during any assessments, appeals or tribunals.
The reason you need this benefit is because you are sick and vulnerable, and the assessors and decision-makers (what a stupid title!) need to know exactly how sick and vulnerable you are in order to give you the right level of benefit.

If you feel uncomfortable with the idea of a stranger reading or hearing about your vulnerabilities, think of it this way: this is your opportunity to give a no holds barred account of everything you’ve suffered; every indignity or struggle or emotion. You can tell someone exactly how hard it is without worrying about complaining too much, or making them sad, or how it’ll affect them; it’s literally their job to hear about how bad things are for you.

If being sick makes you depressed, then say that. If you feel isolated, then say it. Constant pain? Confusion? Memory loss? All of it goes in. It’s a long list, and you might get tired (or sad) when writing it. Just take a break, and go back to it later, or get someone to help you. You can use extra paper if you need to, and bullet point if full sentences are hard, but don’t leave anything out.

Writing down how bad things really are is really difficult, but it can also make you realise how strong you are to deal with everything you do. It’s okay to feel down during or after completing a form, but just remember, you’re doing this for a good reason, and you are much, much tougher than you realise.

I don't really think this needs to be said (because it happens a lot less than both the Government would like, and the right wing press would have you believe), but in the interest of protecting myself and all of you, I'll remind you that you should never lie on official forms. It is a criminal offence and you can be prosecuted for Fraud.
ME/CFS sufferers face constant suspicion when trying to convince people that, a) ME/CFS is real, b) that we have it, and c) that it really sucks as much as we say it does.
Given that, I'd say the chances of us lying on our forms and giving those doubters ammunition are about as likely as the Daily Fail giving a fair and unbiased account of anything; technically possible, but astronomically unlikely.

6 comments:

I would suggest also gather objective evidence. E.g. do the 10 minute NASA test to see if you have orthostatic intolerance (see Lucinda Bateman's website. 2. If you have orthostatic intolerance maybe your feet become mottled/purple when you stand- take a photo. 3/ Get someone to video you doing the neurological balance test called the Rhomberg test (Another test Lucinda Bateman uses). 4. Measure your temperature daily- its often low. 5. Wear a heart rate monitor and start gathering evidence of those werid ME/CFS reactions to exertion- HR elevated after exertion as described in the ICC diagnostic criteria. 6. The moons of your fingers may have disappeared- another sign in the ICC. This evidence is best taken to your doctor as its always more powerful if your doctor says you have ....abnormalities... Consider a CPET test (see Workwell Foundation for information on CPET). All in all this disease may be invisible but there are plenty of objective measures of physical dysfunction and abnormalities.

Thanks Hanna for a timely and helpful article. I'm about to apply myself. I've been avoiding any initiating any claim for too long. It seems ridiculous but I've just not been up to it physically or mentally. I'm a deserving as the next person.

About Me

ME/CFS is a chronic condition that leaves it's sufferers constantly and inexplicably exhausted with a wide variety of flu-like symptoms including muscle pains, headaches, loss of short-term memory and concentration. It often means sufferers are unable to work, have active social lives or even leave their house (or in some cases, bed).